I posted around a year ago, when I was “diagnosed”, then undiagnosed and lately back to being diagnosed again. I have been reading the threads but not posting…what a lurker lol.
I have now had 3 weekly B12 injections, then I am to have one every 3 months. I am on iron as well. Latest test now shows white blood cell count is low- which it never has been before. So tomorrow I am off to cancer/haematology specialist to discuss that. I suspect it could be due to having osteoarthritis in the hip (highest category for surgery, been waiting for a year).
The only symptom I have is the abnormal cells found in my stomach over a year ago.
Anyway thought I’d touch base again and see if anyone else had low white blood cell as well?
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Tellingbones
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Thanks yes I saw the specialist today and she thinks it’s due to B12 deficiency too, but did a bunch of blood tests incase cancer and or others. If they come back bad then they will do a bone marrow biopsy. So am hoping they are ok.
Thanks Cobalt- sorry to hear that luckily I don’t get sick much at all. It’s just the weird abnormal cells in my stomach. What gastro issues do you have if you don’t mind me asking?
Thank you for your kind words Tellingbones!I'm glad you don't get sick!
That's interesting about the abnormal cells in your stomach. My gastro issues maybe slightly atypical for pernicious anemia, but I certainly don't mind sharing. In the years and months before I was diagnosed, I was getting to the point that I could barely eat. I had early satiety to the point that I was really worried I was developing gastroparesis. I would go into a dark, silent closet after eating because noise and sunlight made it almost impossible to digest food. I was losing weight unintentionally and getting really tired, needing naps to get through the day and simple chores. I was nauseous ALL the time and when I did eat, if often felt like someone was standing on top of my guts compressing them down. I got to be 'underweight' according to the BMI scale and I was sort of wasting away.
I also had (and to some degree still have) a host of food sensitivities. I get some reflux as well. I had an endoscopy and colonoscopy a few months after being diagnosed (I was really highly positive for Intrinsic Factor antibodies as well as having leukopenia and ever so slight red cell anemia), and they found instrinsic factor antibodies on my stomach tissue sample, but strangely no gastritis. I say strangely because I was having so much trouble and pain with eating that I just assumed I must have raging gastritis. Also strange, they found some small erosions in the antrum (lower part) of my stomach, which is not consistent with autoimmune gastritis which is usually found in the corpus and fundus.
We think that I have significant mast cell activation because many of my symptoms line up with that. I also have IgA deficiency and it's fairly common for people with primary immune deficiencies to get mast cell activation. It would explain many of my food sensitivities, and I've also read that some people with mast cell activation have really bad gastritis and also intestinal issues that can resemble celiac. I was actually diagnosed with celiac through genetic testing and a gluten challenge which I had horrible symptoms from. I don't have the actual gliadin antibodies however.
After starting B12 injections, my early satiety and feelings of gastroparesis almost disappeared completely and I developed a ravenous appetite. I still get some reflux and nausea, but I have regained a large amount of weight and energy.
Hi Tellingbones - when abnormalities checked for cancer, alarm bells can go off. It can be a worrying time. When I first went to the GP with problems, they ticked enough boxes for me to be checked for bowel cancer on a two-week pathway.
Luckily, it turned out to be B12 deficiency symptoms, but in retrospect, glad that this was eliminated very early on. Your specialist seems to be on the case, ruling out any other causes.
Hopefully, your next post will start with "Phew !"
Then you can start moaning, along with the rest of us, about why the doctors think waiting 3 months for a B12 injection works for everyone around the world !
Yes I’ve been checked for bowel cancer twice- and luckily now don’t need another colonoscopy. They just see abnormal cells in my stomach. So this 3 month thing is a “standard” thing? My Gp said she just seeing if 3 months is sufficient she will change it if she deems it necessary. I haven’t heard from specialist yet but given the number of tests she did and some of them take extra time that’s not surprising. Hopefully she doesn’t call me lol. Thanks for your well wishes I appreciate x
Yes, the 3-monthly injection is a "standard" thing, but by no means helps everyone with B12 deficiency. Why ? Probably because we are not standard. A PAS trial in 2018 found evidence of a possible cause for this, but since that research has not been mentioned since, not sure what stage this has reached.
However, GPs are able to determine what frequency is best administered to prevent their patient suffering from continued early return of symptoms. No reason to deteriorate.
My GP was aware that I was getting far worse on this 3-month frequency, had my MMA checked, found that I had functional B12 deficiency and immediately changed my frequency to 2 injections a week with a mind, once ready, to maintain improvements with one injection a month. The 2-a-week frequency was slowly starting to work - so my GP continued this for six months. Monthly injections did not help me, and so I started to self inject at this stage. I now have 2 a week again. Yet my cousin has injections every 6 weeks and this is fine for her. So we are not the same, even in the same family.
But it is important that your GP gets that. And, luckily, I think she does !
I was found to have "patchy gastric metaplasia" and "flattened mucosal pattern at D1 and D2" (duodenum) which also probably isn't "standard", but once Coeliac disease was ruled out, no-one seemed bothered about these gastroscopy results.
I really hope that your specialist also finds nothing of interest in all those tests - but glad they are being thorough. Wishing you very well.
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luckily I don’t get sick much at all. It’s just the weird abnormal cells in my stomach. What gastro issues do you have if you don’t mind me asking? 
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